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  • Post
    • January 24, 2015 at 2:14 pm
    ecc26
    Participant

    Hello everyone, 

    It has been a very long time since I've had a presence on this board. I was hired by our local university in July last year and have been so busy between my treatment schedule and work obligations that I have completely lost touch with this board and the people who are on it.

    I am happy to say that I am doing very well. I started PD-1 last June in Boston, which only lasted for 4 doses before the discovery of a 3.5 cm mass in my brain put things on hold. The mass was surgically removed in September and I did well enough pre and post surgery to only delay my next PD-1 by a week. By then FDA approval had come through and I've been able to get my infusions here at my local hospital, which has been very nice. My scans continue to improve, with my last CT in December and my last MRI on Jan 14 (they are not grouped together due to the craniotomy). The hope is that perhaps by this time next year things will have shrunk down enough or been stable long enough to consider a trial period without infusions. I haven't had the best of luck in the past with things lasting (or even working), but I hope that this is the one that does it for me. I had forgotton what it felt like to not live in such constant fear, though I don't trust things quite yet.

    I'm really enjoying my job and feeling well enough to do that and get back into a regular exercise routine, etc. I'm aware that some of you are not getting the results you were hoping for and all I can really say is that I'm pulling for you. 

    Wishing everyone out there the very best and hoping that you find the thing that really works for you!

    -Eva

Viewing 8 reply threads
  • Replies
      • January 24, 2015 at 2:58 pm
      JoshF
      Participant

      HI Eva!!!

      I have been wondering where you've been. Sorry you went through some real tough times but it sounds like things are on a better path; which makes me so happy for you.

      SO after you stared PD-1 it showed up in your brain? So scary. I'm just happy you posted, are doing well and getting back to "normal" life. Unfortunately like you I always struggle with "trusting" things. Hopefully time can take care of it. Wishing you the best!!!

      Josh

      • January 24, 2015 at 2:58 pm
      JoshF
      Participant

      HI Eva!!!

      I have been wondering where you've been. Sorry you went through some real tough times but it sounds like things are on a better path; which makes me so happy for you.

      SO after you stared PD-1 it showed up in your brain? So scary. I'm just happy you posted, are doing well and getting back to "normal" life. Unfortunately like you I always struggle with "trusting" things. Hopefully time can take care of it. Wishing you the best!!!

      Josh

        • January 24, 2015 at 10:35 pm
        ecc26
        Participant

        Well, really I've had multiple batches of brain mets, this one just took everyone by surprise and was especially concerning given the size and evidence that the PD-1 was working in the rest of my body. No one ever wants to have a craniotomy and I had a lot of anxiety heading into it, but things went better than anyone expected. It helped that despite the size of the mass I had no symptoms leading up to the surgery, but instead of the average week long hospital stay I was discharged just 2 days later, still with no symptoms of anything other than some pain from the surgery (and really even that was relatively mild). Things got even better when the path report came back and there were no live cells in the mass- all dead. The working theory is that either: it was radiaion necrosis from previous SRS, or, what now seems more likely given the follow up MRIs- the PD-1 is having an effect in my brain and this was a tumor that "expanded" as it was dying as a result of the PD-1. 

        All the best to you on your journey as well,

        -Eva

        • January 24, 2015 at 10:35 pm
        ecc26
        Participant

        Well, really I've had multiple batches of brain mets, this one just took everyone by surprise and was especially concerning given the size and evidence that the PD-1 was working in the rest of my body. No one ever wants to have a craniotomy and I had a lot of anxiety heading into it, but things went better than anyone expected. It helped that despite the size of the mass I had no symptoms leading up to the surgery, but instead of the average week long hospital stay I was discharged just 2 days later, still with no symptoms of anything other than some pain from the surgery (and really even that was relatively mild). Things got even better when the path report came back and there were no live cells in the mass- all dead. The working theory is that either: it was radiaion necrosis from previous SRS, or, what now seems more likely given the follow up MRIs- the PD-1 is having an effect in my brain and this was a tumor that "expanded" as it was dying as a result of the PD-1. 

        All the best to you on your journey as well,

        -Eva

        • January 25, 2015 at 12:13 am
        eric w
        Participant

        Hi Eva,

         

        Can I ask what your MRI showed that led the conclusion that maybe the PD-1 was making the treated tumor expand? Thanks

        • January 25, 2015 at 12:13 am
        eric w
        Participant

        Hi Eva,

         

        Can I ask what your MRI showed that led the conclusion that maybe the PD-1 was making the treated tumor expand? Thanks

        • January 26, 2015 at 12:55 pm
        ecc26
        Participant

        It was a combination of the fact that there were absolutely no live cells in the mass that was removed, the other smaller brain tumors were shrinking, and I'd had other subcutaneous tumors that had expanded (some quite painfully) before shrinking down and for all intents and purposes dissapearing.

         

        • January 26, 2015 at 12:55 pm
        ecc26
        Participant

        It was a combination of the fact that there were absolutely no live cells in the mass that was removed, the other smaller brain tumors were shrinking, and I'd had other subcutaneous tumors that had expanded (some quite painfully) before shrinking down and for all intents and purposes dissapearing.

         

        • January 26, 2015 at 12:55 pm
        ecc26
        Participant

        It was a combination of the fact that there were absolutely no live cells in the mass that was removed, the other smaller brain tumors were shrinking, and I'd had other subcutaneous tumors that had expanded (some quite painfully) before shrinking down and for all intents and purposes dissapearing.

         

        • January 25, 2015 at 12:13 am
        eric w
        Participant

        Hi Eva,

         

        Can I ask what your MRI showed that led the conclusion that maybe the PD-1 was making the treated tumor expand? Thanks

        • January 24, 2015 at 10:35 pm
        ecc26
        Participant

        Well, really I've had multiple batches of brain mets, this one just took everyone by surprise and was especially concerning given the size and evidence that the PD-1 was working in the rest of my body. No one ever wants to have a craniotomy and I had a lot of anxiety heading into it, but things went better than anyone expected. It helped that despite the size of the mass I had no symptoms leading up to the surgery, but instead of the average week long hospital stay I was discharged just 2 days later, still with no symptoms of anything other than some pain from the surgery (and really even that was relatively mild). Things got even better when the path report came back and there were no live cells in the mass- all dead. The working theory is that either: it was radiaion necrosis from previous SRS, or, what now seems more likely given the follow up MRIs- the PD-1 is having an effect in my brain and this was a tumor that "expanded" as it was dying as a result of the PD-1. 

        All the best to you on your journey as well,

        -Eva

      • January 24, 2015 at 2:58 pm
      JoshF
      Participant

      HI Eva!!!

      I have been wondering where you've been. Sorry you went through some real tough times but it sounds like things are on a better path; which makes me so happy for you.

      SO after you stared PD-1 it showed up in your brain? So scary. I'm just happy you posted, are doing well and getting back to "normal" life. Unfortunately like you I always struggle with "trusting" things. Hopefully time can take care of it. Wishing you the best!!!

      Josh

      • January 24, 2015 at 3:52 pm
      Bubbles
      Participant

      Oh, Eva.  I know all that had to be a scary time.  So glad things are better now!  Here's to an ever improving 2015 for you!!!  celeste

      • January 24, 2015 at 3:52 pm
      Bubbles
      Participant

      Oh, Eva.  I know all that had to be a scary time.  So glad things are better now!  Here's to an ever improving 2015 for you!!!  celeste

        • January 24, 2015 at 10:36 pm
        ecc26
        Participant

        Thank you, I hope your 2015 is a good one as well.

        -Eva

        • January 24, 2015 at 10:36 pm
        ecc26
        Participant

        Thank you, I hope your 2015 is a good one as well.

        -Eva

        • January 24, 2015 at 10:36 pm
        ecc26
        Participant

        Thank you, I hope your 2015 is a good one as well.

        -Eva

      • January 24, 2015 at 3:52 pm
      Bubbles
      Participant

      Oh, Eva.  I know all that had to be a scary time.  So glad things are better now!  Here's to an ever improving 2015 for you!!!  celeste

      • January 25, 2015 at 4:49 am
      Mat
      Participant

      Eva, like the others, I've been wondering about you.  I'm so glad to hear that you're doing well with PD-1 and, importantly, that you've been pleasantly distracted with work and life.  Wishing you continuing success.

      • January 25, 2015 at 4:49 am
      Mat
      Participant

      Eva, like the others, I've been wondering about you.  I'm so glad to hear that you're doing well with PD-1 and, importantly, that you've been pleasantly distracted with work and life.  Wishing you continuing success.

        • January 28, 2015 at 12:33 pm
        Maureen038
        Participant

        That's such wonderful news Eva!! My husband had a similar experience where they surgically removed two nodules in his lung and most of it was dead too from the Pd1!!

        Maureen

        • January 28, 2015 at 12:33 pm
        Maureen038
        Participant

        That's such wonderful news Eva!! My husband had a similar experience where they surgically removed two nodules in his lung and most of it was dead too from the Pd1!!

        Maureen

        • January 28, 2015 at 12:33 pm
        Maureen038
        Participant

        That's such wonderful news Eva!! My husband had a similar experience where they surgically removed two nodules in his lung and most of it was dead too from the Pd1!!

        Maureen

      • January 25, 2015 at 4:49 am
      Mat
      Participant

      Eva, like the others, I've been wondering about you.  I'm so glad to hear that you're doing well with PD-1 and, importantly, that you've been pleasantly distracted with work and life.  Wishing you continuing success.

Viewing 8 reply threads
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